tag:blogger.com,1999:blog-24442401684357864292024-03-25T01:10:12.401-05:00The Broken Road"Our lives are made in these small hours. These little wonders, these twists and turns of fate..." - Rob ThomasTiffanyhttp://www.blogger.com/profile/00136730311790093702noreply@blogger.comBlogger349125tag:blogger.com,1999:blog-2444240168435786429.post-54282953511419704212018-01-08T21:55:00.001-06:002018-01-08T21:55:07.839-06:00AngerFor so long, I wasn't mad. What good would it do? I grieved exactly the way I was supposed to. The infertility, the death of a perfectly "healthy" beautiful baby, the autism diagnosis and all that goes along with it. I was on it. I had it handled. I was seeing the silver lining, seeing the beauty.<div>But years of being at home alone with twins that were constantly sick, a special needs child and that empty chair at the dinner starts to eat away you. Before long, I had no idea who was looking back at me in the mirror. I used to see a person full of hope, faith and energy. I had perspective. Now, I see someone who is shattered. Broken by years of grief and unchecked stress. She's anxious, irritated and angry. The perspective is gone. All I see is the bad, the heavy. I only feel the constant weight of our life, the failure of motherhood. A shell of what was.</div><div>It wasn't supposed to be this way. I never thought it would be easy. But sometimes, I do wonder why? Yeah yeah yeah, everyone has their issues. But not everyone has this. Its not just a special needs kid, two poorly adjusted kindergarteners, endometriosis, unexplained dizziness and a broken furnace, it's also a grandma with a serious head bleed the day before a brother with suspected meningitis turned sepsis the week before the anniversary of Ellie's passing. And it's like this all time.</div><div>I'm tired. I'm exhausted. And I am angry. I see the ease that other families navigate daily life without appointments, intense schedules, anxiety and neuroses to deal with. They go to soccer, meet friends for dinner (because they are invited out by families that have kids that are nice to their kids), plan spur of the minute trips and the biggest upset of the weekend is how to fit hockey in with soccer and dance class. I hate them. I hate their ease and I hate that they have no idea what it's like on this side. I hate the exclusion and isolation of being surrounded by "perfect." </div><div>The anger comes fast and hard. I hate that it's the people in my house that catch it. But I have no strength to stop it and no where else to go. I'm angry that my baby got taken away while others pop theirs out one after another without any consideration to whether they can care for them. I'm angry that some people are given incredible miracles only to toss it aside while I begged for a miracle as my baby turned into an unrecognizable being right before my eyes. I'll take that miracle! I'll trade your wasted breaths for my chubby hand baby. I hate the memories that surround those days- things that no one should ever have to see and unspeakable decisions. I hate the holidays because there is always someone missing- it's never complete. I hate my birthday because it's 11 days before Ellie's and while I get older, she's forever 9 months and ten days. </div><div>I hate autism. Not my son. Autism. Because Max is not autism. I hate that people don't see the difference. I hate that it runs my entire life and dictates our every movement as a family, and I hate those who don't understand why it has to be this way. I hate that doctors won't help him and there are no answers. I hate watching my son struggle every day and seeing his face contort into painful tics that no one can stop or is concerned about. I hate dealing with the school and idiot teachers who treat my kid and myself like secondary citizens. I'm mad that everything is so difficult, that everything is a fight. And that it is never enough, it never stops.</div><div>I hate the collateral damage. Conversations that end with an angry five year old because you buried her sister before she ever got to meet her. Kids that know too much of Heaven, and exceptions that must be made for certain situations. The knowledge that they will surely hate me when their older because of it. The complete fear and utter terror that comes with the warm skin of a child with a fever. The cascade of images that flood in with the fear- grey skin, eyes rolled back, sirens, the faces of knowing nurses and doctors, the smell of hospital soap, the grinding sound of a line being placed over the sound of me singing Baby Beluga, the constant beep of the low pressure alert, the oozing, the smell of vomit, the voice of the responding officer, the sound of the suction machine, the sound of "I'm sorry". </div><div>I'm angry at our medical community for failing to protect and help my child. I hate the appointments, the gas lighting, the lies. I hate the supplements, therapy, droppers and syringes. I hate that I'm not sure there is help out there anymore. I hate that I don't trust those that says they can help and that the help offered is so complicated. I hate special diets and have come to despise food in general.</div><div>I hate anxiety and all of the control is has over me. The pounding heart, the shortness of breath, the dizziness, headaches, blurry vision and fatigue. The feeling of drowning while those around you continue to not notice. The feeling that everything is spiraling away and you lack the ability to control anything. But what I hate most about anxiety is how angry it's made me. The constant fight or flight response presence has depleted my ability to control my anger. My body and mind have lost the ability to appropriately respond to stress and has left me broken, exhausted and angry. </div><div>I hate feeling this way. But am starting to wonder if it's partly because I never felt this way earlier. Grief has a funny way of not giving a shit what you think. It demands attention and it'll just take it if it's not offered up.</div>Tiffanyhttp://www.blogger.com/profile/00136730311790093702noreply@blogger.com5tag:blogger.com,1999:blog-2444240168435786429.post-22449319759883741512017-10-13T23:20:00.001-05:002017-10-13T23:20:04.519-05:00Maybe it's timeThis screen. This blank screen. I've been here several times over the last few years. I've put down a few sentences and closed out. Unsaved. <div>What was the point? </div><div>Seven years ago, I needed to find a community. We were nearing an autism diagnosis and needed someone to understand. I think of that girl who came up with up with the blog title "The Broken Road." She thought it made sense, we'd had a rough road having a baby, but there we were with two beautiful babies. Yeah, autism, but we could handle it. It was broken, but it would be a beautiful road. </div><div>I think of that girl and it makes me so sad. So much innocence, hope, strength. She had no idea what was coming. Within weeks, it would be gone. That beautiful baby would be gone, the naive outlook on autism gone. That girl, gone.</div><div>Seven years ago, this blog kept me going. The moms I met... I have an unexplainable amount of respect, tenderness and love for them. They got it. They were my community. My words were their words. But as time and technology changed, so did our community. Rainbows appeared, Instagram popped into our lives and my need for this place became lesser. My need of them is met in Facebook posts and a quick sentence accompanied by an Instagram picture. Its a beautiful thing, what the Internet has given us.</div><div>But this place never became the place I was looking for in the autism world. That place was a lobby in the Early Childhood Building a few miles from our home. For weeks, I sat there waiting for my boy to come out of "class." I didn't say much. I spent my time staring at the pink nuk in a little sister's mouth. It was the same one Ellie had. I made no eye contact.</div><div> I watched in the morning as one by one, our boys were taken from us. Some went happily, some with screams and tears. I started to look at their faces- the other moms. We were all struggling. At some point, referrals started being passed. The "oh yeah, we don't do haircuts without blood shed either" stories were shared. </div><div>They were- ARE- my people. My lobby moms. My real life, I can drink coffee, or frozen adult drinks, in your living room, people. My I-can-hug-you-any-time-I-want people. (Well not one- she doesn't like that.) we have been through hell and back a hundred times. Among us, there has been the death of a child, divorce, a stroke, a child diagnosed with T1D and a husband with a catastrophic near death illness. </div><div>We are ragged and weary. Our boys are amazing and beautiful, but have put us through the wringer. We get what the word "meltdown" means. <span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">We laugh a lot, especially at things we probably shouldn't. We leave spots at the table for the massive amount of baggage and anxiety each other brings.</span></div><div><font face="Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif">I can't even think of where I'd be without my lobby moms. And as much as I'm thankful for my online loss moms, I'm incredibly grateful for my in real life lobby moms. </font></div><div><font face="Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif">I didn't think I needed this place anymore. I assumed thoughts could be sorted on Instagram, Facebook or over pineapple martinis. And for awhile, I was right. What was the point of this place?</font></div><div><font face="Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif">But after, seven years, things aren't any clearer. I have my people, but my thoughts are all still jumbled up. Things are feeling harder. Heavier.</font></div><div><font face="Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif">Maybe it's the time of year. Maybe it's the almost decade of "broken" road. Maybe it's the feeling of first time parent with kids numbers three and four. I'm seeing less beautiful and more broken. I don't like it. I don't like the jumble of pain, frustration, doubt and anger in my head. The heaviness of life post child loss and autism diagnosis is crushing. I used to wonder all the time how much it would take before I actually shattered from the weight of it all... I don't wonder anymore. I feel like I know.</font></div><div><font face="Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif">I have my people. But I have MY trauma. I am finding that for so long, I operated extremely well in crisis mode. But no one can sustain that. And I can't expect that those jumbled thoughts can be untangled by leaning on others. Maybe I need to go back to writing it out. To get it out.</font></div><div><font face="Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif">Maybe it's time to come back here.</font></div><div><br></div>Tiffanyhttp://www.blogger.com/profile/00136730311790093702noreply@blogger.com7tag:blogger.com,1999:blog-2444240168435786429.post-82622240372580181472015-10-22T10:35:00.001-05:002015-10-22T10:35:55.137-05:00Five Years Gone<a href="https://screen.yahoo.com/just-breathe-194454840.html">https://screen.yahoo.com/just-breathe-194454840.html</a><br />
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<i>"Yes, I understand that every life must end, aw-huh,..<br />
As we sit alone, I know someday we must go, aw-huh,..<br />
Oh I'm a lucky man, to count on both hands<br />
the ones I love,..</i></div>
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<i>Some folks just have one,<br />
yeah, others, they got none, huh-uh</i></div>
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<i>Stay with me,..<br />
Let's just breathe.</i></div>
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<i>Practiced all my sins,<br />
never gonna let me win, aw-huh,..<br />
Under everything, just another human being, aw-huh,..<br />
Yeah, I don't wanna hurt, there's so much in this world<br />
to make me bleed.</i></div>
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<i>Stay with me,..<br />
You're all I see.</i></div>
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<i>Did I say that I need you?<br />
Did I say that I want you?<br />
Oh, if I didn't I'm a fool you see,..<br />
No one knows this more than me.<br />
As I come clean.</i></div>
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<i>I wonder everyday<br />
as I look upon your face, aw-huh,..<br />
Everything you gave<br />
And nothing you would save, aw huh,..<br />
Nothing you would take<br />
Everything you gave...</i></div>
<div class="verse" style="text-align: center;">
<i>Did I say that I need you?<br />
Oh, did I say that I want you?<br />
Oh, if I didn't I'm a fool you see,..<br />
No one knows this more than me.<br />
And I come clean, ah-ah...</i></div>
<div class="verse" style="text-align: center;">
<i>Nothing you would take,..<br />
Everything you gave.<br />
Hold me till I die,..<br />
Meet you on the other side."</i></div>
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It's been almost five years since this song played as we walked down the aisle of the church. Away from Ellie and into the after. It's been almost five years since I've been able to listen to this song. Five years.</div>
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In five years our lives have changed greatly. We have moved into a new house in a wonderful neighborhood. Ellie has another brother and a sister. We've watched Max become more comfortable in his own skin and learn to join us in our world more often than not. We've welcomed three adorable nephews. Our lives are different. We've gone forward.</div>
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But we have not moved on. Upstairs there is still a giraffe that sits on a shelf. Pictures remain on the mantel and side table. Jingle Bells hang from rearview mirrors. Our kids speak of Ellie daily. They know their sister and love her. We still celebrate her birthday.</div>
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When Ellie first died I often wondered how life would ever go on. How could days continue to pass without her in this world. I was often angry at those I saw on the street- innocently going on with their lives. Didn't they know? </div>
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As time passed, it did become easier to put my feet on the floor in the morning and get up. Eventually smiles and laughter returned. We did start healing. Holidays and anniversaries passed with greater ease and fewer tears. Dave and I are lucky to have to many family members and friends that help us honor and remember Ellie on a daily basis. We have always been free to talk about her and celebrate her nine months and ten days. The early days of shock, anger and uncontrollable sobs eased and for the most part disappeared. </div>
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But for some reason, five years came rushing down on me and has knocked me to my feet. I'm angry, out of sorts and a teary mess. Addy and Levi go to preschool at the church where we held Ellie's funeral. And up until this week, going there hasn't been a problem for me. But when we pulled in the parking lot this morning, I lost it. With shaking hands, I walked to kids inside and bit my tongue as hard as I could to keep the tears in until I made it to the car. Yes, the return of the car cry. You BLMs know what I mean. It has been so long that I've cried this much. It's shocking. </div>
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Yes I miss Ellie terribly every day. I see the empty spot at dinner table and in the car. The fourth coat hook. They stare at me every single day. But I try to not make eye contact and just keep moving. I see the Time Hop pictures for those who have five year old girls and try not to think about what we are missing. When the neighbor is over to play after kindergarten I try not to think that "this is what our walks should look like." It is always there. For the rest of our lives, we will carry a hole. A hole of what should be a sassy kindergartener, a mouthy and disrespectful teenager, a college student, an excited bride, and tired new mother... These things are never going away.</div>
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I guess I just forgot that sometimes the reminder of what we are missing can come back in a not so gentle way. It's not always a sad smile, diverted eyes or the quiet welling up of tears in your eyes. Sometimes it's screaming, torrents of hot tears and anger. Sometimes it's memories of the unspeakable things our eyes have seen and ears have heard. It's brutal and relentless.</div>
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I worry that people assume after five years, we've moved on. That grief has subsided and lies quietly in the closet. All tucked away. I guess in some ways, even I had been convinced of this. But the last couple days have been nothing but proof that grief never goes away. We learn to ride the waves, but occassionally, against all our best efforts, a tsunami of tears and pain slams us back into the ground where we started. People say it's the price you pay for loving someone so deeply. And that's fine- I agree. But it doesn't take the hurt away. And it doesn't make it easier. </div>
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After five long years, I still just want my baby back.</div>
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<br />Tiffanyhttp://www.blogger.com/profile/00136730311790093702noreply@blogger.com4tag:blogger.com,1999:blog-2444240168435786429.post-52419280722727540032015-01-14T23:14:00.001-06:002015-01-14T23:14:40.730-06:00On the Eve of Five: FrozenAnna and Elsa.<br />
<br />
It's pretty much the only thing five year old girls talk about. The only acceptable birthday party theme for a five year old girl this year is Frozen.<br />
<br />
Tonight I should be plastering Olaf, Anna and Elsa all over our house in preparation for a certain little five year old to see when she wakes up in the morning. And for a moment, I considered it. A very brief moment. But in reality, every single of one of Ellie's birthdays is a Frozen birthday. Ellie is forever frozen in time. She will forever remain 9 months and ten days. So while I did buy a simple pink "5" candle, the truth is that it is all for show. There is no five year old in this house. Ellie will never be five years old.<br />
<br />
Constant sickness among the other kids and the general busyness of life easily allowed this day to sneak up on me. And for that I'm grateful.<br />
<br />
Five.<br />
<br />
It's a big deal. Five isn't a preschool. Five is school age. Five means school. Five year olds are little people. Most five year olds could talk your ear off about their favorite toys, movies and friends.<br />
<br />
Five years after I gave birth to a beautiful screaming baby girl, I can tell you nothing about her five year old self. I know nothing about what shows she likes to watch, who her best friend is or what she wants to be when she grows up. I don't know if she prefers Anna or Elsa. I know nothing about that five year old.<br />
<br />
I'm mad. I feel cheated. I'm sad. I'm trying not to go there. I'm worried that if I start tumbling down that dark path, I will fall into a hole so big that I won't be able to climb out of it.<br />
<br />
Fortunately (or not, depending how I look at it I guess), there is a certain big brother that is looking forward to celebrating someone's 5th birthday. Max has his Ellie's Light shirt picked out to wear tomorrow, plans on shouting "Happy Birthday Ellie!" upon waking in the morning, thinks we should go out to dinner and have "muffins with frosting." Addy was heard singing "Happy Birthday Ellie" earlier today. And because I make a big deal of the kids' birthdays, there are decoration expectations...<br />
<br />
So tonight I pulled out things pink and purple. Sparkly and girly. And lots of pictures of the most perfect little girl with chubby fingers and thighs, fuzzy head and mischievous smile...<br />
<br />
sigh<br />
<br />
...Tomorrow we are having a Frozen birthday. But there is will be no Anna, Elsa or Olaf. There won't even be a birthday girl. Just some pictures of a little girl, frozen in time.<br />
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<br />Tiffanyhttp://www.blogger.com/profile/00136730311790093702noreply@blogger.com5tag:blogger.com,1999:blog-2444240168435786429.post-69115786652936755402014-10-23T23:25:00.001-05:002014-10-23T23:25:18.080-05:00four years gone<div class="separator" style="clear: both; text-align: center;">
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My dear sweet girl,<br />
<br />
How has it been four years?<br />
<br />
Four years since I put you into your fuzzy fleece footie pjs, turned off the light and rocked your tiny little body.<br />
<br />
Four years since I loaded you into the stroller with your brother for an evening walk.<br />
<br />
Four years since I listened to your little growl and sweet giggle. It's been four years since I've seen that sweet and goofy smile.<br />
<br />
In four years, so much has happened. So much has changed. We have moved into a new house and have wonderful, amazing neighbors. Your big brother Max has grown up into a sweet, smart and hilarious little boy. He works so hard and you would be so proud of how far he has come. Your baby brother and sister are almost 2 and a half already! Levi is so sweet, smart and sensitive. Addy is a stinker, loves to be the center of attention and is a little social butterfly. You would LOVE these two! I'm sure they would drive you crazy, but you wouldn't trade them for anything! I know you would be such a great big sister!<br />
<br />
It's been four years and so much has happened and so much has changed. But still, four years later, so much is still the same. I still think about you every day, all day long. I wonder how every single thing we do would be different if you were with us. I see you missing from every single picture and at every family meal. The crisp fall air takes my breath away and I thank you for every single pink and purple sunset we are blessed with. I still miss your fuzzy head on my face as we cuddle on the couch and miss your sweet intoxicating smell.<br />
<br />
It's been four years and I still wake up wondering how we are living each day without you. In four years, my mind has not figured out how to wrap itself around that day when you were taken away. I still secretly hope that one day I will wake up and find out that it never happened. That you never went through all of that pain and were here running around laughing with your sister and brothers.<br />
<br />
Four years little Peanut. I have missed you every minute of every day. You are always with me and I am so incredibly grateful for every single second we had with you.<br />
<br />
Mama loves you Ellie Lauree! Always have, always will.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhlqtJ3a4l0KAYR9DZqw77duec4Wn5Oz6t_Go_xIuq9ZaVuu28JBLWtZvmx8OYQUuwb0or-nVfofZWNjg1Zkpq3-6ehH_eEO_2WvwtcwoEEiT_sYz407ycIfgqy-FZGtWYco-ucawIptUai/s1600/IMG_5533.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhlqtJ3a4l0KAYR9DZqw77duec4Wn5Oz6t_Go_xIuq9ZaVuu28JBLWtZvmx8OYQUuwb0or-nVfofZWNjg1Zkpq3-6ehH_eEO_2WvwtcwoEEiT_sYz407ycIfgqy-FZGtWYco-ucawIptUai/s1600/IMG_5533.JPG" height="426" width="640" /></a></div>
<br />Tiffanyhttp://www.blogger.com/profile/00136730311790093702noreply@blogger.com9tag:blogger.com,1999:blog-2444240168435786429.post-19027096930639272182014-09-21T22:35:00.000-05:002014-09-21T22:35:34.647-05:00Ellie's Light Blood DriveOn Saturday, September 27th from 8:30-12:30pm, Ellie's Light is having it's first blood drive in Lakeville, Minnesota. <br />
<br />
One in three people will need a blood transfusion.<br />
<br />
Our blood drive is a chance for YOU to save someone's life.<br />
<br />
If you would like to donate and want to sign up for a time, follow this <a href="http://16972 Brandtjen Farm Dr., Lakeville, MN 55044" target="_blank">link</a>:<br />
<br />
http://www.mbc.org/Donate-Blood/Search-Blood-Drives<br />
Click on Sponsor Code and type in 4233.<br />
<br />
We are also accepting walk-ins!<br />
Memorial Blood Center will have their blood mobile out to collect these life-saving donations: <br />
16972 Brandtjen Farm Dr., Lakeville, MN 55044<br />
<br />
<div style="text-align: center;">
****</div>
<br />
I am very excited to be able to be able to give back to Memorial Blood Center in Ellie's name and here is why...<br />
<br />
<br />
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<br />
<div class="MsoNoSpacing">
Ellie’s Transfusion Story:</div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
Our sweet and silly little girl suddenly became gravely
ill on October 24, 2010. Within 25 hours, a seemingly benign fever turned into
an extremely rare and deadly illness. When Ellie arrived at the hospital, the
staff was stumped. No matter what they did, her illness progressed. For some
reason, Ellie was becoming septic and her body was not responding to any
treatment. Her body started showing signs of a complication called DIC.
Essentially, her body depleted itself of all its clotting ability. It was at
this point that Ellie started receiving blood products. <span style="mso-spacerun: yes;"> </span>As Ellie’s condition further deteriorated, it
became obvious to the doctors that Ellie would not survive. As a last ditch
effort, the decision was made to put her on ECMO (the heart-lung bypass
machine).<span style="mso-spacerun: yes;"> </span></div>
<div class="MsoNoSpacing">
The ECMO machine takes the blood out of the body,
oxygenates it, and sends it back into the body. The machine requires several
units of blood to operate. This combined with Ellie’s sepsis and complication,
DIC, meant she used a lot of blood products. We are not entirely sure how many
units of blood products Ellie actually received due to some inaccuracies in her
chart. But I can remember a doctor at St. Paul Children’s calling Memorial
Blood Bank to say that Ellie had used up all the supply there and he wanted to
make sure Minneapolis Children’s would be prepared for her when we arrived for
ECMO.</div>
<div class="MsoNoSpacing">
I would guess that between the two hospitals, what the
ECMO required and what Ellie’s sick body needed, she used at least ten units of
red blood cells, platelets, fresh frozen plasma and cryo. The nurses were
constantly bringing blood products into the room. </div>
<div class="MsoNoSpacing">
It wasn’t until after Ellie’s autopsy that we learned her
spleen did not work and she never stood a chance against the “high-velocity”
germ that took her life. In the end, no amount of blood was going to save
Ellie’s life. Her fate was determined before anyone even knew she was sick. But
each and every unit of blood product brought into that room gave her a chance.
It gave us hope. We can look back and know that every effort was made to save
Ellie. Without the blood, she would not have survived more than a few hours.
The transfusions allowed our family and friends to get to the hospital to say
goodbye and to be with us when we set our little girl free. </div>
<div class="MsoNoSpacing">
We are incredibly thankful to those who took the time to
donate their blood, never knowing that it would give our little girl a fighting
chance, and her family peace of mind knowing that everything possible was done
to save Ellie’s life. And for us, that’s an incredible gift.</div>
<div class="MsoNoSpacing">
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Hope to see you next Saturday!! </div>
Tiffanyhttp://www.blogger.com/profile/00136730311790093702noreply@blogger.com1tag:blogger.com,1999:blog-2444240168435786429.post-5909185441734224702014-09-02T23:37:00.002-05:002014-09-02T23:37:36.989-05:00Not every kid gets to go to KindergartenAwww the first day of school...<br />
A day I have come to dread.<br />
<br />
Most parents are dancing in street as the bus pulls away from the corner. Clinking their coffee mugs together in a celebratory cheers. As they walk home, they happily post their obligatory "First Day of School" pictures. <br />
<br />
Today Facebook is jam packed with adorable faces sporting new backpacks and shoes, and carefully chosen outfits. Most are holding up carefully designed signs that announce what grade they are entering. Some <strike>parents</strike> moms go on to lament about the great sadness they are experiencing now that their BABY is gone. <span style="font-size: xx-small;">Gone? Really? Gone?<span style="font-size: small;"> </span></span><br />
<span style="font-size: xx-small;"><span style="font-size: small;"><br /></span></span>
<span style="font-size: xx-small;"><span style="font-size: small;">Listen, I get it. It's hard to send your child off to school all day long when they have been with you since the moment they were born. I get that it's hard to not know exactly what they are doing, what they are eating, if they are sad, being picked on, etc. I get it. It is hard to realize that your child is growing up and some day they won't need you.</span></span><br />
<span style="font-size: xx-small;"><span style="font-size: small;"><br /></span></span>
<span style="font-size: xx-small;"><span style="font-size: small;">I get it.</span></span><br />
<span style="font-size: xx-small;"><span style="font-size: small;"><br /></span></span>
<span style="font-size: xx-small;"><span style="font-size: small;">But what I would like some people to understand is that not every child goes to kindergarten. </span></span><br />
<span style="font-size: xx-small;"><span style="font-size: small;"><br /></span></span>
<span style="font-size: xx-small;"><span style="font-size: small;">Sometimes kids die. </span></span><br />
<span style="font-size: xx-small;"><span style="font-size: small;"><br /></span></span>
<span style="font-size: xx-small;"><span style="font-size: small;">Next year, there will be one less kindergartner getting on our neighborhood bus. And I can tell you that it will rip my heart out. It's going to kill me. When the other kindergarteners in the neighborhood line up to get on the bus across the street from our house, my vision will tunnel, my heart will pound and my breath will evade me. </span></span><br />
<span style="font-size: xx-small;"><span style="font-size: small;">Her absence in her kindergarten class will be felt by me yet not a single soul in that room will recognize the loss. I will not be posting a picture of my kindergartener next fall. A picture of a headstone just isn't the same.</span></span><br />
<br />
<span style="font-size: xx-small;"><span style="font-size: small;">Not every kid goes to kindergarten.</span></span><br />
<br />
<span style="font-size: xx-small;"><span style="font-size: small;">In fact, my five year old didn't go to kindergarten today with the rest of the five year olds in our neighborhood either. </span></span><br />
<br />
<span style="font-size: xx-small;"><span style="font-size: small;">He did go to school, just like he has almost every single day since he was 2 years old. But he didn't go to kindergarten. He went to school, which is really a pseudonym for his "therapy based center." All of his "friends" there have autism too, and very few of them realize that most kids have summers off and don't go to school ALL OF THE TIME. I didn't take a picture of Max this morning. Today wasn't anything new for us. We did speech and OT before heading to "school" just like we have every Tuesday for the last ...... I don't even know how many months...</span></span><br />
<br />
<span style="font-size: xx-small;"><span style="font-size: small;">I know a very sweet little boy that did go to kindergarten today. This little boy has been in school with Max since they were little tiny two year olds. He isn't even my child, and all day today, I worried about him. I prayed he would have a great day, and I hear he did. (Go Gus!) I'm so proud of him and wish I could squeeze him and tell him how awesome he is. </span></span><br />
<span style="font-size: xx-small;"><span style="font-size: small;"><br /></span></span>
<span style="font-size: xx-small;"><span style="font-size: small;">Why would I be so worried about and proud of a child that isn't even mine?</span></span><br />
<span style="font-size: xx-small;"><span style="font-size: small;"><br /></span></span>
<span style="font-size: xx-small;"><span style="font-size: small;">Because I know how hard he has worked. I know how far he has come and I KNOW he DESERVED to have the best first day of kindergarten ever. He didn't just pick out a new backpack and show up at the bus stop for his first day of school. He EARNED it. His family earned it. </span></span><br />
<span style="font-size: xx-small;"><span style="font-size: small;"><br /></span></span>
<span style="font-size: xx-small;"><span style="font-size: small;">So when my brutally honest friend said (in regards to all the other "typical" kindergarten parents), "My day is bigger than your fucking day!", I couldn't have agreed more. She, too, knows that not every kid gets to go to kindergarten with all of the other five year olds. She knows that sometimes kids die, and she knows that some five year olds just aren't able to handle a typical kindergarten class. She knows that sometimes this milestone is one that has to be fought for.</span></span><br />
<span style="font-size: xx-small;"><span style="font-size: small;"><br /></span></span>
<span style="font-size: xx-small;"><span style="font-size: small;">Today, I should have taken a picture of Max sitting on our porch steps, proudly holding his "First Day of Kindergarten" sign. His four year old sister, should have been standing next to him holding a sign announcing her "First Day of Preschool". But that is not my life. </span></span><br />
<span style="font-size: xx-small;"><span style="font-size: small;"><br /></span></span>
<span style="font-size: xx-small;"><span style="font-size: small;">I'm not ok that Ellie isn't here. There will always be an Ellie shaped hole in our lives. But I'm ok with the fact that Max didn't start kindergarten today. Max is awesome, there is NO doubt about that. But he isn't ready for kindergarten quite yet. </span></span><br />
<br />
<span style="font-size: xx-small;"><span style="font-size: small;">Max has been working his tiny little butt off for the past three years to prepare himself for a day in early January 2015, when I will insist he stand out on the front porch (yes in the Minnesota cold), holding a sign that PROUDLY states, "First Day of Kindergarten."</span></span><br />
<span style="font-size: xx-small;"><span style="font-size: small;"><br /></span></span>
<span style="font-size: xx-small;"><span style="font-size: small;">And I will plaster Facebook with those pictures all the while knowing that not every kid gets to go to kindergarten. I will do it with complete gratefulness for every single therapist, teacher and aide that has crossed Max's path thus far. I will do it with an incredible amount of pride for a boy that has fought tooth and nail for every word and social interaction that has brought him to this place. I will do it with complete respect for every terrified parent that has released their special needs child into the wild world of public schools before me. I will do it with a love in my heart for all of those kids that aren't ready quite yet, or that may never be ready for kindergarten. I will do it with a great sadness in my heart for every parent that will never get to take that all important picture for their child. </span></span><br />
<br />
<span style="font-size: xx-small;"><span style="font-size: small;">So to every parent that has (rightfully) posted a picture of their precious child on the first day of kindergarten- I beg of you, please understand that not every child gets to go to kindergarten. Please recognize this day with gratefulness and excitement for your child. And please, in the back of your mind, remember that for some parents, the first day of school is a painful and heartbreaking day. </span></span><br />
<br />
<span style="font-size: xx-small;"><span style="font-size: small;"> </span></span><br />
<span style="font-size: xx-small;"><span style="font-size: small;"><br /></span></span>
<span style="font-size: xx-small;"><span style="font-size: small;"><br /></span></span>Tiffanyhttp://www.blogger.com/profile/00136730311790093702noreply@blogger.com3tag:blogger.com,1999:blog-2444240168435786429.post-24463014340590498922014-02-12T22:43:00.003-06:002014-02-12T22:43:33.545-06:00<div class="separator" style="clear: both; text-align: center;">
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Maybe some day, I'll get it together enough to blog again! For now, these three keep me VERY busy!<br />
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<br />Tiffanyhttp://www.blogger.com/profile/00136730311790093702noreply@blogger.com3tag:blogger.com,1999:blog-2444240168435786429.post-85045710155202555222013-09-27T22:35:00.000-05:002013-09-27T22:35:25.695-05:00The Other Side of The Other Side<!--[if gte mso 9]><xml>
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<span style="font-size: 14.0pt;">It has been a while since
I've spent any time in this space... Life has been busy and not afforded me
much time to spend here. And in all honesty, this space has been consciously
avoided at times. But we are nearing that time of year again when the air is
crisp and fills my chest with dread. My mind starts to drift places that I
typically don't allow it to stray. And there is something that has been on my
mind since Monday, July 22nd...</span></div>
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<span style="font-size: 14.0pt;">When Ellie died, my life
changed forever. In fact, the second Ellie entered the PICU in critical
condition, my perspective on everything instantly changed. It quickly became
obvious that those who had not stood where we had did not understand. Most
tried, but never really understood. I found great comfort in those who were on
my side- The Other Side. </span></div>
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<br /></div>
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<span style="font-size: 14.0pt;">The Other Side... On this
side, a nurse has looked at you with incredibly sad, knowing eyes. A doctor has
sighed before walking up to you to say the words that you will remember
forever. On this side, you have had sleepless nights at the hospital and spent
hours in prayer, begging for a miracle. You may have had a conversation with a
serious man in a tie that ended up with you picking out a casket or burial spot
for your loved one. On this side, you have walked back through your door wondering
what the hell has just happened to your life.</span></div>
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<br /></div>
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<span style="font-size: 14.0pt;">It is hard on The Other
Side- impossible at times. Suffocating, lonely, desperate and out of control.
It is sad, full of regret and guilt. To me, I could almost see a physical wall
between me and those who were not on The Other Side. Being on The Other Side is
all consuming and it is blinding. It isn’t that you stop caring about those you
once stood with, but you just can’t see past where you are at now. </span></div>
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<span style="font-size: 14.0pt;">The wall never completely
goes away, but I think, over time, it becomes more transparent. You get
glimpses of what is going on over there and sometimes remember what it was like
before the wall. You remember that there are loved ones still over and maybe,
you understand that it hasn’t been easy for them either. It is hard on them
having you on The Other Side…</span></div>
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<span style="font-size: 14.0pt;">On the evening of Monday,
July 22<sup>nd</sup>, 2013, Dave and I were powering through another dinner
with the kids. Life here was our normal. Kids throwing food on the floor,
demanding more fruit and Dave and I were looking forward to bedtime! We had no
idea that we were about to cross over to The Other Side of The Other Side.</span></div>
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<span style="font-size: 14.0pt;">Right at the end of dinner,
Dave’s phone rang. It was the call no one ever wants…</span></div>
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<span style="font-size: 14.0pt;">Our brother-in-law,
Travis, and one year old nephew, Layton had been in a bad car accident. All we
knew was that they were on their way to the trauma hospital and Dave’s sister,
Chrissy, was on their way to meet them. We made plans for my mom to come sit
with your kids after they were in bed so we could go down there. Over the next
hour, we got confusing bits of information from various people but it became
obvious that the accident was much worse than we assumed…</span></div>
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<span style="font-size: 14.0pt;">Travis and Layton had been
on their way home, when a man fleeing the police, driving down the wrong side
of the road, ran a red light and broadsided them. Both were air-lifted to the
hospital and emergency personal at the scene were certain that Travis would not
make it to the hospital. Layton had a small brain bleed in one ventricle and a
bruise on his temple. Travis had a larger brain bleed, a collapsed lung, broken
ride, large facial laceration and internal bleeding. Both were intubated and
sedated in the Trauma ICU when we arrived. </span></div>
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<span style="font-size: 14.0pt;">From the beginning, the
doctors were pretty sure Layton would be just fine. And he was. Within a week
and a half, he was out of the hospital and mostly back to himself. I have no
doubt that during that car accident, his cousin Ellie, laid down right over the
top of him. It is a miracle that this beautiful, beautiful boy survived with
such few injuries. </span></div>
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<span style="font-size: 14.0pt;">At the time of the
accident, Chrissy was seven months pregnant. And there were times during those
first couple days, when we weren’t sure if that baby would ever get to meet his
Daddy or at least the Daddy that the rest of us knew. Conversations were had
about survival, catastrophic brain damage, long term care…. It was devastating.
It was shocking, heart-breaking and mind numbing. In an instant, the rug was
pulled out from all of us. In a split second, everything changed. </span></div>
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<span style="font-size: 14.0pt;">As I stood alone in my
nephew’s room, next to his crib, holding his hand, I listened to the nurse in
the next room explain Travis’ injuries to his wife, parents, grandparents and
sisters. I thought about my sister in law Chrissy, and I was sick for her. I
knew how I felt as the sister in law to Travis and aunt to Layton. I couldn’t
imagine how horrible this was for her. To be seven months pregnant and have
your one year old intubated in the ICU and your husband- your support and other
half- in the room next door with life threatening injuries, is way more stress
than one person should ever have. It was tragic and unfair…</span></div>
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<span style="font-size: 14.0pt;">It was there in that quiet
room, standing next to my unconscious nephew, that it hit me- this is what it
feels like to be on The Other Side of The Other Side. This beautiful, innocent
family that we love so much was suffering and hurting, and we were powerless to
help them. There wasn’t one thing we could do to make it better. I didn’t have
words to make it not hurt so much and I couldn’t do anything to make it go away.
We couldn’t make the doctors stop telling her about all the bad things that
happened to her family and we couldn’t erase the vision of her son and husband lying
in hospital beds from her memory. And when everything was “calm” for the night,
we got to go home to our kids, together, who were safe and sound in their beds,
and leave Chrissy keeping vigil at her boys’ side. </span></div>
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<span style="font-size: 14.0pt;">We were sad, angry,
anxiety-ridden and shocked. We hurt for Travis, for sweet little Layton and for
Chrissy. We wanted it all to go away. We were sad for not being able to be at
the hospital with our family every moment… In these moments, I began to
understand how our friends and family felt when Ellie was sick, and after she
passed, and when Levi was shortly hospitalized for “meningitis.” They not only
hurt for themselves, but for our children and for us. They wanted to make it
better, make it go away, yet they were powerless. They were left to hand out
hugs and bring bottles of wine, all the while knowing it wasn’t enough. They
were grieving for themselves, and for us. They too, had sadness, anger and
pain. It wasn’t the same as mine, but just as real.</span></div>
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<span style="font-size: 14.0pt;">As I’ve said before, I
have very little recollection of many aspects of being in the hospital with
Ellie, and the few days after she died. And for that, I am extremely grateful.
I most certainly have aspects of PTSD, and can’t imagine how it would be if I
had to carry around memories of everything that happened. One thing I don’t remember
is how our friends and families were notified when it came time to say
good-bye. And I don’t want to know. It might be selfish, but I don’t want to know
how it all went down. I don’t want to know how they felt at her funeral, how
they felt carrying her small casket or standing at her graveside. I don’t want
to know, and I am so grateful that no one has forced that on me. I’m not sure I
could handle it. I feel like I can hardly handle my own grief- I think it would
kill me to know how hurt our loved ones were and still are.</span></div>
<div class="MsoNoSpacing">
<span style="font-size: 14.0pt;">But being on The Other
Side of The Other Side has reminded me just how much our families and friends
went through when Ellie died and again when Levi got “sick.” It reminded me
that they too were traumatized and forever changed. They dealt with all of that
while standing by us while we drowned in our grief. And for that, I am forever
grateful. I’m thankful they had the strength to endure it and eternally sorry
that they had too. Because if I learned one thing this summer, it was that even
though being on The Other Side is nearly impossible, it’s not easy on The Other
Side of The Other Side either.</span></div>
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<span style="font-size: 14.0pt;">*****</span></div>
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<span style="font-size: 14.0pt;">Travis walked out of the
hospital just over three weeks after the accident and graduated from outpatient
therapy after just two weeks with minimal residual injury from the accident. He
isn’t completely 100% yet, but he will get there. Less than two weeks ago, he
was there by her side, when Chrissy gave birth to our new perfect and
completely adorable nephew, Nash. Without a doubt, we witnessed a miracle this
summer…. </span></div>
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<span style="font-size: 14.0pt;">The second lesson I
learned this summer- sometimes there are happy endings… </span></div>
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<![endif]-->Tiffanyhttp://www.blogger.com/profile/00136730311790093702noreply@blogger.com6tag:blogger.com,1999:blog-2444240168435786429.post-29513142771562159442013-05-12T21:48:00.000-05:002013-05-12T21:48:20.259-05:00Happy Mother's DayHappy Mother's Day to the best moms we could ask for! We wouldn't have made it through this last year without you!<br />
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And to our wonderful Grandmas!<br />
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I am so thankful for the four perfect little people that made a Mommy!<br />
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<br />Tiffanyhttp://www.blogger.com/profile/00136730311790093702noreply@blogger.com3tag:blogger.com,1999:blog-2444240168435786429.post-84173181817332331312013-04-18T15:45:00.001-05:002013-04-18T15:45:20.038-05:0010 months x2<br />
<i>So the babies are actually 11 months old today- so I suppose that I should get this finished up before I forget!! yikes I'm behind! </i><br />
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I cannot believe that the babies have entered double digits. I can't believe that they are now older than Ellie ever was. This milestone was much harder than I even anticipated that it would be. The several rounds of fevers the kids had certainly didn't help at all. But we got through it, and the babies are double digits!<br />
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<u><span style="font-size: x-large;">Levi</span></u><br />
Weight: 18lb, 4oz.<br />
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Diaper Size: size 4<br />
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Clothing Size: 12 months<br />
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Nicknames: Buddy, Giant Baby, Mister<br />
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Feeding: Levi still takes about six bottles a day of Gentlease formula. He does a good job with his purees, and is finally doing better with solids. However, we are still very, very slow to introduce them as neither baby does a great job. He's had bits of kiwi, mango, banana (so not a favorite- he hates them!), carrot and avocado. Plus the puffs. <br />
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Sleep: Levi usually goes to sleep around 7:30pm and that's a stretch for him. I think he would be happier going to sleep a little earlier but that doesn't really work with our schedule- sorry buddy! He takes to naps a day, and they are usually pretty good. However, they started to get sick at the end of the month, and that really put a horrible wretch in the schedule. Sick babies are not sleeping babies!<br />
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Firsts: First Baby Shower- one neighbor threw a shower for another and the babies went with me to celebrate. Levi met his friend, Jason for the first time! Jason is the son of my good friend from college and we were soooo excited to finally meet him! St. Patrick's Day. We didn't do anything, and in all honesty, the kids didn't even wear their cute outfits until the next day- that's what happens when Mommy doesn't feel good I guess! <br />
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Skills/ Milestones: Getting up on his hands and knees- he is so close to crawling! He does this cute little army crawl/ scoot thing! Standing up at the couch without much help. Plays Patty-Cake. Improving on his self-feeding skills. Doing a great job waving and even does it without being prompted! Turning pages of a book. Got a tooth on the top- three total!<br />
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Words/ Noises: Ma-Ma, Da-Da, Ba-Ba, Ni-Ni
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Life with Levi: Levi is observant and very focused. He is reserved at first but his little personality is really emerging. He is so silly! Once he decides that something or someone is ok, he will gladly share his smiles. He loves to cuddle and is so sweet with stuffed animals and dolls. Levi has finally started to fight back a little bit when Addy takes things away. He is becoming super interested in books and really likes to look at the faces of things. Levi is a pretty laid back baby but when he is tired, hungry or not feeling well, he is quick to cry- and it is a very pathetic cry. When he sticks his lip out, he looks just like his brother! I could just cuddle him all day long! And he'd probably let me too!<br />
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<u><span style="font-size: x-large;">Addy</span></u><br />
Weight: 16lbs<br />
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Diaper Size: Size 3<br />
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Clothes Size: nine months for most everything. But some shirts and dresses are 12mos.<br />
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Nicknames: Buggy, Bug, Buggers, Little Missy, Stink Face, Buglet<br />
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Eating: This child is going to blow away in the wind, if she doesn't start eating more! A somewhat nasty cold and ear infection really put a damper on her already finicky eating habits. Towards the end of the month, she was only eating 2-3 oz about six times a day. She only eats bites of her purees and bites of whatever solid we give her. She has eaten chunks of kiwi, carrots, apples, avocado, mango and banana. She does not like banana either! We can usually get her to eat puffs, but she has even been refusing these lately :(<br />
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Sleep: Addy went from sleeping almost all the way through the night for over a week, to having to be held ALL night long. Being sick really made it hard for her to get good sleep so we ended up with her in our arms for pretty much the whole night. I also think that not eating during the day made it hard for her to rest well at night. She is generally taking two naps a day, but with the illness she has been taking little cat naps on and off all day.<br />
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Firsts: First Baby Shower- one neighbor threw a shower for another and the
babies went with me to celebrate. Addy met her friend, Jason for the
first time! Jason is the son of my good friend from college and we were
soooo excited to finally meet him! St. Patrick's Day. We didn't do
anything, and in all honesty, the kids didn't even wear their cute
outfits until the next day- that's what happens when Mommy doesn't feel
good I guess! <br />
<br />
Skills/ Milestones: Addy is almost crawling. She is sooo close! Days away I would guess! Plays peek-a-boo with blankie and also does a pretty good Patty-cake. Standing up at the couch or holding onto our hand- she thinks she's so cool when she does this! Addy waves, has starting pointing, and is pretty good at feeding herself. Addy got a tooth on the top!<br />
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Words/ Noises: Ma-ma, Da-Da, Ba-Ba, MA-MA!!!, mo-mo (more), Hiiii, he-he. Ba-ba (which I think is for her bottle). "inky"- stinky. Ba (ball).<br />
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Life with Addy: This little stinker sure gives us a run for our money! (and I can say that because we did in-vitro and we did actually pay for our children!) She is so funny, mischievous and too adorable to get mad at. Addy craves attention and gets rather annoyed if she's not the center of attention. If people are laughing and she isn't directly involved in the situation- she laughs anyways. Even from across the room. Her stink face cracks me up and she knows even her "I'm annoyed with you" face is funny. We see her stink face quite often these days and I can only imagine what the teenage years are going to be like with this one! She likes to <strike>pick on</strike> play with her brother and when he isn't with her, she definitely notices. There is no way that he gets to do something or have something that she doesn't. Addy is good stuff, that's for sure!<br />
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Some pictures of our small people-<br />
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<br />Tiffanyhttp://www.blogger.com/profile/00136730311790093702noreply@blogger.com2tag:blogger.com,1999:blog-2444240168435786429.post-2589865905084283412013-04-05T15:32:00.000-05:002013-04-05T15:32:04.945-05:00What I'm sick of...So you're sick of hearing about autism huh?<br />
<br />
Sick of hearing about how the government won't step in and help our kids. Sick of "autism awareness." Sick of hearing about this study, or that study. Sick of hearing "one in fifty."<br />
<br />
Guess what?<br />
<br />
I'm sick of it too.<br />
<br />
Actually, I'm sick of a lot of things.<br />
<br />
I'm sick of spending all week driving my four year old all over town Monday through Friday. And I'm sick of carting two ten month olds along to sit in every germ infested waiting room along the way.<br />
<br />
I'm sick of scheduling appointments. I'm sick of specialists and I'm sick of paperwork. Every new doctor, therapist or specialist requires the same information but in a slightly different format. I'm tired of filling out hundreds (yes, at this point it's been hundreds) of forms that want me to detail exactly how delayed my child is. And I'm sick of arriving at the appointment only to discover that they haven't bothered to read any of the paperwork I spent hours filling out and want to instead rehash everything while my impatient and anxious child obsessively opens and closes the office door. I'm sick of loading three children in and out of the car four to six times a day.<br />
<br />
I'm sick of being a stay at home mom that doesn't do anything with her children except for going to appointments. This isn't what I had in mind when I pictured staying at home with my children. I pictured music class, ECFE playtime, trips to the zoo and park. I didn't picture my oldest being so stressed out by music class, or new places that we are forced to stay home. I didn't picture raising my children in a waiting room with a bunch of strangers who ask too many questions and make too many judgmental faces. I never pictured autism in my life. I certainly didn't picture autism running my life...<br />
<br />
I'm sick of spending my time online looking up new treatments, researching supplements and map questing clinics. I'm sick of finding out that the newest, best, most promising treatment isn't "covered" or not available in this area. I'm sick of hearing how autism is a "behavioral issue" or "mental health problem." It's not. It's a MEDICAL issue.<br />
<br />
I'm sick of hearing about gluten-free, dairy-free, soy-free, dye-free, preservative-free, non-GMO, cage-free, grass fed food. I'm sick of hearing about toxins, plastics, chemicals, sulfates, formaldehyde. I'm sick of talking about vaccines, antibiotics, probiotics, cod liver oil, vitamins and inflammation markers. I'm sick of worrying that every. single. thing. my children come into contact with is further poisoning their bodies and setting them up for a lifetime of struggles.<br />
<br />
I'm sick of the lack of support for families dealing with autism. When your child is diagnosed with autism, no one tells you what to do next. You get a pat on the back, and a "good luck with that" look before you're sent on your <strike>merry</strike> way. I'm sick of finding out we are on our own to help Max. I'm sick of there being no <i>expert</i> experts. I'm sick of pouring our time, money and energy into every treatment, all the while knowing that there are no promises. I just want someone to have the answers- all them, and the right ones.<br />
<br />
I'm sick of hearing that "I just don't know how you do it!" Guess what- I don't either. I'm barely hanging on. I'm doing it at the expense of my friendships, my marriage, myself and at Levi and Addy's expense. I hardly have time for Ellie's Light. And to me, this means I don't have for Ellie. I'm sick of explaining that we can't do this or that, because we have appointments or because my child just can't handle something like that. I hate the panic attacks Max gets when I have to leave him. I'm sick of watching the neighbors sit and chat outside while their children happily play together. I'm sick of feeling like an outsider.<br />
<br />
I'm sick of working my four year old like a dog. I'm sick of watching him struggle with life's easiest tasks. I hate that he is missing out on the simple joy of childhood friendships. I hate that he has been robbed of so much joy because his body is under attack from something we cannot identify. I'm sick of seeing his tears over things like new shoes, a simple change in routine or having to take off his socks. It kills me to watch life be so hard for him. I'm sick of waking up in the morning and wondering if it will be a day of cooperation, flexibility and focus, or one of meltdowns, rigidity or stress. I'm sick of watching my child function in a world all of his own- one that I don't always understand, and that I'm not always welcome in. It's heartbreaking.<br />
<br />
I'm sick of our society choosing money over our children. Our government has the power and ability to drastically change the lives of our children. And they refuse. Instead, "we" allow big companies and their pocketbooks to control the way we grow and process our food, treat our livestock and manufacture toys. I'm sick of our kids- our one in fifty kids- not being acknowledged. I'm sick of everyone talking about what a problem autism is in our modern society- but NO ONE doing anything about it.<br />
<br />
I'm sick of <a href="http://www.our-kids.org/Archives/Holland.html" target="_blank">Holland</a>. Screw Holland. If I wanted to go to Holland, I would have bought a damn ticket to Holland. I'm sick of people pressuring special needs parents to be all puppies, sunshine and rainbows. Yes, we love our children. I love Max more than anything. And we do find so much joy in him. Even if Max never makes any more progress towards "normal," we love him. But because I love him so much, I refuse to just accept. Max deserves more than that. All of our children deserve more than that. Because of that, we need to be honest. We don't need to be made to feel guilty about being stressed. We are not complainers. We don't always just have to accept that hand we've been given. We get to be mad. We need to let people know how hard it is and how pervasive autism is. I'm sick of empty platitudes. Don't tell me your sorry. Help us. Help us help our kids. Be sick of autism with us.<br />
<br />
So yeah, I'm sorry your sick of our puzzle piece logos (don't even get me started on those!), and our blue lights. Do something about it. Because we're sick of it too.Tiffanyhttp://www.blogger.com/profile/00136730311790093702noreply@blogger.com13tag:blogger.com,1999:blog-2444240168435786429.post-11475474481919051732013-02-27T21:02:00.001-06:002013-02-27T21:02:44.982-06:00Nine months, nine daysToday Addy and Levi turned nine months and nine days old.<br />
<br />
The day was spent doing mostly normal things. We took Max to therapy and school. Did some dishes, laundry. Lots of playing, a lot of Patty Cake and I stole many hugs and kisses.<br />
<br />
Levi and Addy had their nine month well child check today. It was <strike>mostly</strike> a normal well child check- except for the conversation regarding their older sister's autopsy report. Our wonderful doctor assured us several times that the babies were perfectly healthy. Nothing APPEARED to be wrong with them.<br />
<br />
As he said this, we both knew I only half believed him.<br />
<br />
After all, Ellie was once nine months and nine days old too.<br />
<br />
The day Ellie was nine months and nine days old, I also stole many hugs and kisses from her. In fact I stole hundreds- probably thousands. The day Ellie was nine months and nine days old, she had our undivided attention for the entire day. She was the only thing we could see that day.<br />
<br />
But the day Ellie was nine months and nine days old was nothing like the babies' ninth month and ninth day.<br />
<br />
Ellie spent her day fighting. Fighting against something she never had a chance of beating. On Ellie's ninth month and ninth day, she woke up at 2am and gave me a goodbye smile. Her day was filled with tubes, needles, bags and vials of medication. On her day, dozens and dozens of people fought with everything they had to keep her with us.<br />
<br />
On Ellie's ninth month and ninth day, she disappeared before our very eyes. <br />
<br />
As I watched Addy and Levi laugh and play today, I couldn't help but see how alive they were. Their eyes sparkle, their laughter vibrates right into my core. Their brightness shines through the whole house... As much as I told myself, I wasn't going to let my mind go there- it did. All damn day.<br />
<br />
What if from out of nowhere- they were taken today too? How is it possible that on her ninth month and eighth day Ellie was this alive, and then the next day, not? How does that much light just disappear?<br />
<br />
Its been two years, four months, two days and 17 hours since Ellie died.<br />
<br />
It still doesn't make sense. Tiffanyhttp://www.blogger.com/profile/00136730311790093702noreply@blogger.com6tag:blogger.com,1999:blog-2444240168435786429.post-61241061008239836482013-02-24T22:59:00.002-06:002013-02-24T22:59:29.721-06:009 months x2<div class="separator" style="clear: both; text-align: center;">
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<span style="font-size: large;"><br /></span>
<span style="font-size: large;"><u>Levi</u></span><br />
Weight: Not really sure- we go in for the well child check this week.<br />
<br />
Diaper Size: size 4<br />
<br />
Clothing Size: almost everything but fleece pjs is 12mos.<br />
<br />
Nicknames: Buddy, Giant Baby, Cub-a-Roo, Flipper<br />
<br />
Feeding: Levi takes about six bottles of Gentlease Formula throughout the day. He usually wakes up once during then night to eat- more often he is starting to make it until about 5-6am! He learned how to hold his own bottle! He eats almost every puree we give him. He definitely likes fruit more than the veggies. He has an obsession with Puffs. He gets this certain little whine that means he wants Puffs. And when you show him the container he gets SO excited! Its the cutest thing! The other night, he ate a quarter of an avocado the wasn't pureed- just cut up into little pieces. It's really the first time he's done well with something like that! Occasionally, he can get a Puff into his mouth but he still really hasn't figured out the whole feeding himself thing yet. As long as we don't put cold water into his sippy cup, he does really well with it. <br />
<br />
Sleep: Levi does great in his crib! He usually turns on to his left side or onto his stomach. Since learning to put his own nuk in, there aren't too many times we have to go in there at night. He usually goes to be around 7:30am and is up at 6am. He is ready for his morning nap but I usually try to keep him up until 9am. He then takes an afternoon nap from about 2-3pm. Unfortunately Max's schedule really interferes with morning naps. They aren't as willing to nap in their car seats now. Levi needs his nuk and blankie with him when he sleeps and this boy sure loves his blankie!<br />
<br />
Firsts: A trip to Nickelodean Universe on one of Max's day off. Levi was pretty quiet when we were there and just took in the sights. Swinging- We put a sensory area in the basement for Max and we put the outdoor swings down there for the babies. The first time, Levi was freaked out. But now he loves to swing down there! Valentine's Day- really, they had no idea. Levi got a small new toy, an outfit and a bath toy that he has to share with his sister.<br />
<br />
Skills/ Milestones: Rolling all over the place! Just barely starting to show interest in maybe trying to get up on his knees sometimes in the near future. Stands up really well! He can almost stand up unassisted at the couch but sometimes forgets what he's doing. Peek-a-boo expert. He can every predict what direction you will come from if you are taking turns peeking out from different sides of something. Getting better at that pincer grasp. Holding his own bottle. Holding things with his feet- I swear he thinks they are an extra set of hands! Occasionally he will wave, but it's with a fist instead of an open hand. Gives kisses and actual hugs!<br />
<br />
Words/ Noises: Ma-Ma, Da-Da, Ba-Ba, Ni-Ni (means he's tired)
<br />
<br />
Life with Levi: Levi just gets funnier and funnier all the time. He cracks us up all the day long! He does this silly face and dance when he's excited- which is pretty much all the time! He's such an easy-going and laid back baby. He only cried if he is hungry or tired. Even then, it's more of a whine. He doesn't often actually cry. Levi is pretty willing to let anyone hold him, but he definitely keeps an eye on me and sometimes he does just want Mommy. He is patient and tolerant, especially of his sister who is always up in his business. He is so sweet! He gives real arms around you, squeezing hugs. He loves to cuddle. He's smart and focused. He likes to look at books and doesn't seem to miss much. Levi is pretty amazing.<br />
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<br />
<br />
<u><span style="font-size: large;">Addy</span></u><br />
Weight: not really sure- we will see this week. <br />
<br />
Diaper Size: Size 3<br />
<br />
Clothes Size: nine months for most everything. But some shirts and dresses are 12mos.<br />
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Nicknames: Buggy, Bug, Buggers, Little Missy, Stink Face<br />
<br />
Eating: Addy got her last bit of breast milk on the day she turned nine months :( Now she is just one straight Gentlease formula. I'm not sure that she would need to Gentlease formula but since Levi does, it's just easier to have her on that too! Addy has gotten WAY better at accepting the purees. She has always done great with the fruit, but eats most vegetables now too. Even if she doesn't really like them, she'll at least take a few bites. Addy did pretty well with the small pieces of avocado the other day too. She will occasionally still gag on something but I think it's mental thing because we can always see it in her mouth. Solids will be slow going with her I think. Addy is awesome at picking things up off her tray but refuses to put them in her mouth. She also does well with her sippy cup- but she prefers to throw it on the floor. Addy also likes puffs and would eat them all day long if we let her.<br />
<br />
Sleep: Addy usually goes to sleep
at 7:30pm. Sometimes she will wake up shortly after we put her to bed, but usually stays in their now. Once or twice a week, she will stay up until 8:30 or 9pm. I swear she just wants to hang out with us. Addy wakes up anywhere between 5-6am for her bottle and then almost always goes back to sleep until 7:30am. Morning naps for her are a little later- about 9:30am. She usually also takes a short nap on the way home from morning therapy. Her afternoon nap is a little later too at about 3pm. Addy usually wakes up frequently while she sleeps but now that she can put her own nuk in, she often settles herself back down. Addy also needs to blankie and nuk to sleep. We usually find her on her stomach in the morning, otherwise on her left side.<br />
<br />
Firsts: A trip to Nickelodean Universe on one of Max's day off. Addy was out of control happy while we were there! It was pretty funny. She laughed at everyone and everything. She looooved it. Swinging- We put a
sensory area in the basement for Max and we put the outdoor swings down
there for the babies. Addy loves being in the swing- she is still a little small for it, but if we put a stuffed doll in there with her, she's fine. Valentine's Day- really, they had no idea.
Addy got a small toy, a little dress and a bath toy she shares with Levi.<br />
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Skills/ Milestones: Her sign for "all-done" is her pounding her left pointer finger down. She shakes her hands over her head for all done. Addy is so close to crawling. She gets on her hands and knees. She also scoots backwards and can go from laying down to sitting on her own. Addy looks at books and is getting pretty good at turning the pages by herself. Addy can also feed herself her bottle, but also prefers not too. Addy claps when she is excited for happy. <br />
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Words/ Noises: Ma-ma, Da-Da, Ba-Ba, MA-MA!!!, mo-mo (more), Hiiii (she definitely says hi), he-he (yes she actually says he-he when she laughs). Ba-ba (which I think is for her bottle). "inky"- stinky- she even says this with her face all crinkled up.<br />
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Life with Addy: Holy moly... Addy is something else. She is so stinkin' adorable. It's impossible not to love her. She loves to be the mix. She loves to get her attention and if she's not getting all that she wants- she'll speak up about it! She started making this little stink face all the time when she is displeased with something. She even started flashing it at her brother's- which is pretty hilarious. Addy loves to play with her toys (and toes) and likes pretty much anything that someone else has. She's pretty quick and can snatch Levi's nuk faster than a blink of an eye. She is definitely a Mama's girl and isn't afraid to let everyone know it. She's pretty dramatic and all girl. Even with her attitude, it's hard to not think she's the cutest thing ever.<br />
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And bring on the pics...<br />
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<br />Tiffanyhttp://www.blogger.com/profile/00136730311790093702noreply@blogger.com3tag:blogger.com,1999:blog-2444240168435786429.post-70762127585194007612013-02-24T22:59:00.001-06:002013-02-24T22:59:20.737-06:00Valentine's Day Photo Shoot<div class="separator" style="clear: both; text-align: center;">
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After this things started to fall apart pretty quickly... <br />
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<br />Tiffanyhttp://www.blogger.com/profile/00136730311790093702noreply@blogger.com3tag:blogger.com,1999:blog-2444240168435786429.post-79128738011897430022013-02-01T21:34:00.001-06:002013-02-01T21:34:12.492-06:00Ellie's Third Birthday<div class="separator" style="clear: both; text-align: center;">
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On January 15th, Ellie should have turned three.<br />
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There should have been a little girl with pigtails, sassy mouth and big blue eyes, waking us up at the crack of down to remind us that she was now three. There should have been a big Princess or Dora, or whatever, birthday party. There should have been cake. There should have been candles. There should have been someone to blow out those three little candles. And there should have been a little girl there to open presents. There should have been laughter and giggles. There should be a picture on my camera of Ellie at exactly 12:42pm.<br />
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But there wasn't any of that.<br />
<br />
There were balloons. At the cemetery. There was singing. At the cemetery.<br />
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The presents we bought were three stuffed animals for Ellie's Light, a purple blanket for her "room" and a candle that smells of sugar- what I imagine our three year old would smell like. The presents weren't opened. The card never read.<br />
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There were cupcakes. But no cake. This mommy couldn't bear another conversation with a baker about the birthday girl. <br />
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There were tears. Not because I can't believe my baby is growing up so fast. But tears because my baby isn't growing up at all. Because we never got to see Ellie do any of the things that birthday girls do.<br />
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Birthdays are supposed to come every year. But sometimes they don't.<br />
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<br />***<br />
<br />
Dear Peanut,<br />
Three years.<br />
I really can't picture you as a three year old. But I bet you'd be a little mother to all three of your siblings, but a little bit of a puppet master. Smart, funny and adorable. I know there would still be that sparkle in your eyes. Honestly, I don't like to think of you as a three year old. I like to think of you as our chubby, sweet and endearing nine month old. I like to think that some day, we will get to see you blow out three candles on a pink and purple birthday cake. I like to believe that we will get back every moment we have missed with you.<br />
I am so grateful for that day three years ago when you came screaming into this world. From the moment I laid eyes on you, I knew you were something special. You were magical from the minute you arrived, and there hasn't been since, that I stopped believing that you were here to serve a special purpose. Your mere existence forever changed our lives, and so many the lives of so many others.<br />
You are in a word, amazing.<br />
<br />
Happy third birthday to our beautiful, beautiful girl. I miss you everyday, every minute.<br />
Love you forever and ever. And ever and ever,<br />
Mama Tiffanyhttp://www.blogger.com/profile/00136730311790093702noreply@blogger.com10tag:blogger.com,1999:blog-2444240168435786429.post-52672049739703240192013-01-25T22:26:00.002-06:002013-01-25T22:26:45.276-06:008 months x2How did the babies get to be 8 months already?! Crazy...<br />
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I know most people probably don't care about what the babies are eating now, how long they sleep or what size clothes they wear.... this is just a way for me to document so that someday when I get to their baby books, I can actually write something in it!<br />
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<span style="font-size: x-large;"><u>Levi</u></span><br />
Weight: Not really sure, but I would guess 19ish lbs.<br />
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Diaper Size: size 3<br />
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Clothing Size: pjs 9 months, shirts 12 months and pants are some 9 months and some 12 months<br />
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Nicknames: Buddy, Giant Baby, Cubby, Blanket Baby<br />
<br />
Feeding: Still on the Gentlease Formula. Six ounces first thing in the
morning and right before bed. Otherwise about 5 ounces every three to four hours depending on solids. He is eating solids at breakfast, lunch and dinner. Usually gets a fruit with oatmeal or cereal in the morning, a vegetable at lunch along with something that they can feed to themselves like a popsicle or food in those gross mesh bags. At dinner he eats a vegetable or meat/ veggie combo followed by fruit and then baby crack- aka puffs. Lately, Levi has been whining or crying for his food before meal time- this boy is a good eater! He really likes most foods, but isn't a huge fan of things in those mesh bags (don't blame him!) We tried small pieces of banana last night and that ended in a huge puke, so I guess purees for awhile still! Doing really well with drinking water out of a sippy cup.<br />
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Sleep: We finally made the transition to the crib- and more importantly- flat on the back! It was a rough couple nights for Levi, but now he seems to like it. I have even weaned them from their Podsters at nap time. He was waking up a lot for a week or so, (so was Addy) and we finally decided they were cold. A couple of fleece sleep sacks solved that problem though! Levi goes to sleep around 7:30pm and usually sleeps until 3-5am, takes a bottle and goes back to sleep until 6-6:30am. He naps two or three times throughout the day. He has recently started throwing a big fit when he gets tired and not wanting to go sleep. It may be time for him to start putting himself to sleep (instead of being held) soon. But we'll see. I like the cuddles...<br />
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Firsts: First Christmas! Our kids are very lucky and have so many people that love them and that want to spend time with them at the holidays, so we were very busy! Levi loved having people around and loved playing with new toys. He looked pretty dang cute in his Christmas clothes too! First trip to the zoo. Levi was very curious and serious most of the time we were there. He really looks at things and checks them out. He really liked the fish and penguins! Celebrated Ellie's 3rd birthday. Sitting up in the bath tub in a bath seat. Levi really likes bath tub and sitting in the big tub just makes it that much better!<br />
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Skills/ Milestones: Sitting up unsupported! Second tooth! Hollering back and forth and laughing with Addy. Trying popsicles and lots of new foods, including puffs. Levi started doing this upper body back-and-forth dance- hilarious! Clapping hands. Banging things together. Occasionally signing "more." Standing up straight- putting weight on his feet. Scoots a little on his tummy- not much but he sure tries! Playing Peek-a-Boo. Putting his nuk in his mouth.<br />
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Words/ Noises: Ma-Ma, Da-Da, Ba-Ba, Ni-Ni (I swear he says this when he is tired- he's pretty consistent with it!).<br />
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Life with Levi: My sweet, sweet boy. Levi is so cuddly. He loves his blankie and to wrap his arms around you. His little hands and feet constantly move and his fingers massage his blankie, his shirt- whatever he can get his hands on. He wants to touch everything and when you take something away from him that he really wants- he cries- hard- until you give it back! He is so funny and will laugh at pretty much everything. He has gotten so silly lately and loves to make us laugh. He still thinks Addy is hilarious, even if she constantly steals his things. But he is learning to take things back! He loves "Itsy Bitsy Spider" and being read to (of course, he thinks that funny too!). Levi is very serious until he makes a decision on what he thinks of something. I think he must be very smart. He is very focused. Love my sweet boy and his chubby hands that never stop moving! <br />
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<u><span style="font-size: x-large;">Addy</span></u><br />
Weight: not really sure... 17ish lbs.<br />
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Diaper Size: Size 3<br />
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Clothes Size: nine months<br />
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Nicknames: Buggy, Bug, Buggers, Little Missy<br />
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<br />
Eating: Addy gets
thawed frozen breast milk mixed with formula. She is taking about 5oz every 3-4 hours depending on when she eats her solids, and takes 6oz just before
bed and first thing in the morning. Addy has gotten much better with liking her purees. She still turns her nose up at some things and definitely prefers fruit. She seems to like any store bought food better than what I make. I guess maybe because of the smoother texture? Addy still likes to eat things like banana and avocado in the mesh bag and likes popsicles. Addy loves puffs and did pretty good with banana chunks the other night. Addy does really great with water in a sippy cup, and even lifts it way up like she is chugging it. Addy doesn't quite inhale her food like Levi and takes more time in between bites. Little Missy makes a lot of funny faces while eating, and if she has an audience- makes even more, and exaggerates them.<br />
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Sleep: Addy usually goes to sleep
at 7:30pm and sleeps for 15min. Then wakes up and wants to be held for a
little bit, this isn't happening as much as it used to, but still happens. Then she usually sleeps until 4:30 or 5am, wakes for a
bottle and goes back to sleep until 6:30-7 am. She is taking several short
naps a day but occasionally will take a good long nap. Addy made a pretty easy transition to laying on her back in the crib. She was waking up a lot, but is doing much better with her warm sleep sack. <br />
<br />Firsts: First Christmas! No surprise that Addy loved everything about Christmas. All the people and attention, the new things to play with. Did I mention the attention? She handled all the busy days wonderfully!
First trip to the zoo. Addy liked the zoo, and liked looking at the fish, but seemed more interested in whoever was carrying her or other people milling around. Celebrated Ellie's 3rd birthday.
Sitting up in the bath tub in a bath seat. Addy loves sitting up like a big girl and being able to play in the water. <br />
<br />
Skills/ Milestones: Signs "more" and "all done" somewhat consistently. Clapping her hands, banging things together, playing Peek-a-Boo. The occasional wave. Her little Addy dance every time music comes on. Addy is an expert at putting her nuk in her mouth (and Levi's nuk too!). Addy is also a master at getting people's attention- this girl has some serious skill in this department!<br />
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Words/ Noises: Ma-ma, Da-Da, Ba-Ba, MA-MA!!!, mo-mo (more), Hiiii (I swear she says hi), he-he (yes she actually says he-he when she laughs)<br />
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<br />Life with Addy: I seriously had no idea that someone so young and little, could have such an attitude and aptitude for getting attention. If we (or anyone really, even Levi) is not giving her the attention she needs, she will straighten her little arms, throw them down and holler at you while glaring. It's hilarious. Addy is a goofball. She acts like she's shy, but she's definitely not. She's animated and dramatic. She's issues- Mommy issues. Major Mommy issues! Addy is a people person and an overall happy (as long as she's getting exactly what she wants) little girl. She is all girl and I'm pretty sure she thinks she's an only child. Love my little needy little goofball!<br />
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Some more pictures of the small people, or "peeps" as Max calls them...<br />
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<br />Tiffanyhttp://www.blogger.com/profile/00136730311790093702noreply@blogger.com9tag:blogger.com,1999:blog-2444240168435786429.post-26220888165173619002013-01-02T23:25:00.001-06:002013-01-02T23:25:03.130-06:00Twelve for TwelveTwelve Pictures for 2012<br />
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<u><span style="font-size: large;">January</span></u></div>
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We celebrated the second birthday of our little Peanut. We celebrated her with cake, ice cream and a blanket making party, while Ellie celebrated in Heaven. <br />
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<u><span style="font-size: large;">February</span></u></div>
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In February, we welcomed our nephew Layton into the family! I love this picture of his little feet! And so proud of my SIL for how awesome she did with a long and really hard labor and delivery!<br />
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<u><span style="font-size: large;">March</span></u></div>
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Spring was definitely dominated by growing babies- and my growing midsection! At this point I was still able to move around somewhat easily. We were very happy to have made it to this point in the pregnancy!<br />
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<u><span style="font-size: large;">April</span></u></div>
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Letting Max do some VERY messy sensory play with shaving cream and water... I tried to make sure that he got plenty of special activities in before the babies arrived.<br />
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<u><span style="font-size: large;">May</span></u></div>
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The babies holding hands in the OR. Unbelievably amazing day.<br />
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<u><span style="font-size: large;">June</span></u></div>
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Our first "as-close-as-we-are-ever-going-to-get-to-a-family-picture" picture.<br />
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<u><span style="font-size: large;">July</span></u></div>
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Love this picture! And I love hanging out in the yard with the kids in the evening.<br />
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<u><span style="font-size: large;">August</span></u></div>
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Photo taken by Brilicious Photography<br />
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In August, we had our big Light Up the Lanes event for Ellie's Light and raised $9500. It made me pretty emotional to see Ellie's picture everywhere at the event. I miss her so much but it's pretty amazing to see what wonderful things her little life inspired.<br />
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<u><span style="font-size: large;">September</span></u></div>
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In September, we welcomed another little nephew, Alex! I am so glad that the babies are going to have cousins that are so close in age!<br />
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<u><span style="font-size: large;">October</span></u></div>
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Max at exactly 4:44pm on October 3rd. His 4th birthday!<br />
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<u><span style="font-size: large;">November</span></u></div>
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While this great<span style="font-size: small;"> look</span> we are sporting was for a Halloween party, the party was actually in November, so I can use it for my November picture! We live in an awesome neighborhood with really, really wonderful neighbors and we never get to do stuff like this- it was a really fun night!<br />
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<span style="font-size: large;"><u>December</u></span></div>
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Christmas Eve. Celebrating Addy and Levi's first Christmas, Max's excitement in "normal" kid Christmas activities while missing our Ellie.<br />
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It was kind of hard to just picture twelve pictures from the thousands we've taken this year! <br />
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<br />Tiffanyhttp://www.blogger.com/profile/00136730311790093702noreply@blogger.com3tag:blogger.com,1999:blog-2444240168435786429.post-49418141745382972072013-01-02T22:04:00.003-06:002013-01-02T22:04:49.772-06:007 months x2<div class="separator" style="clear: both; text-align: center;">
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<span style="font-size: x-large;"><u>Levi</u></span><br />
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Weight: 17lb 4oz<br />
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Diaper Size: size 3<br />
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Clothing Size: mostly 9 months, but some things are 12 months already!<br />
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Nicknames: Scooter, Buddy, Giant Baby<br />
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Feeding: Still on the Gentlease Formula. Six ounces first thing in the morning and right before bed. Otherwise about 5 ounces every two to three hours. Levi loves his solids! I don't think there is anything he hasn't liked yet! He's had sweet potatoes, acorn squash, carrots, avocados, green beans, pears, apples and bananas. He doesn't seem to like the plain fruit as much as the others, but if I mix it with his cereal in the morning he inhales it! He almost always eats everything I put in the bowl for him, and then what Addy doesn't eat! Eating is serious business with this guy!<br />
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Sleep: The last month has been a little rough for sleep since he popped his first tooth and then they got some sort of virus. But he's still going to bed around 8pm and has been waking up anywhere from 1am to 6 am for his bottle. He usually goes back to sleep until about 6:30am. Levi is an excellent napper- usually taking three or four solid naps throughout the day. He is definitely ready for bed at night! He did pretty good in his crib- flat on his back- for two nights but then they got fevers and coughs so we put them back in their Rock n Plays to they could be elevated and close to us. We hold Levi until he falls asleep, but usually we can put him down when he is still a little awake and he'll go to sleep.<br />
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Firsts: First Thanksgiving! We had my family over at our house and the babies were able to try sweet potatoes for the first time. Levi thought they were ok, but did eat most of his dish. Toys for Tots shopping- the babies got to go on their first big Toys for Tots shopping trip for Ellie's Light. Levi sat in the cart for a while then got out of his car seat to check out all of the action. He is sooo close to sitting up not quite there yet! He will occassionally scoot on his tummy/ face- it's pretty amusing! At almost 7 months, he popped that first tooth! And the second one isn't far behind!<br />
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Life with Levi: Levi has started to come out of his shyness and being so jumpy in the last few weeks. He is very observant and seems to really assess the situation before making his decision on it. He thinks Addy is hilarious and is quick to laugh his little belly laugh and flash that new tooth. He loves to chew on our face and wrap his chubby little arms around our new. He actually gets pretty aggressive about it! When he gets excited, his eyes get wide, he opens his mouth into a little circle and open hand slaps things- just like Ellie. Overall, Laid-back Levi is a happy baby and really likes playing with his toys- or whatever else he can get his paws on.<br />
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<span style="font-size: x-large;"><u>Addy</u></span><br />
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Weight: 15lb 14oz<br />
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Diaper Size: Size 3<br />
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Clothes Size: mostly nine months, which are still a little big, but still have some six month<br />
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Eating: I stopped pumping just after the babies turned six months because I wasn't getting enough to make it worth it. So now Addy gets thawed frozen breast milk mixed with formula. We started adding the formula in to get her used to the taste because I won't have enough frozen milk to last through her first year. I'm hoping that by mixing the two, she can get at least some breast milk until she is nine months old. She is taking about 5oz every 2.5 hours, and takes 6oz just before bed and first thing in the morning. She occasionally has some gagging problems still, but is doing much better. Addy isn't as big of fan of solids as her brother- that's for sure! She usually only takes a few bites of food, but will sometimes eat her entire bowl. She seems to prefer her fruit mixed with cereal. She likes sweet potatoes, acorn squash, bananas, avocado, carrots, apples, pears, and surprisingly, green beans. Addy likes to have frozen banana chunks or fresh avocado put in her mesh feeder to chew on.<br />
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Sleep: Until the colds starting hitting the house, Addy was an excellent sleeper. But now she seems to wake up more. She usually goes to sleep at 7:30pm and sleeps for 15min. Then wakes up and wants to be held for a little bit. Then she usually sleeps until 4:30 or 5am, wakes for a bottle and goes back to sleep until 6:30am. She is taking several short naps a day but occasionally will take a good long nap. This girl does not want to miss anything. We are still trying to get them sleeping on their backs in their cribs- I think it's going to take a while. Addy still sleeps in her Rock n Play next to the bed at night, and then in her Podster in her crib for naptime.<br />
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Firsts: First Thanksgiving! Addy, of course, loved having everyone over at the house. She was not a fan of her first bite of sweet potatoes though! First Toys for Tots shopping event- Addy only lasted a few minutes in the cart and then I put her in the Moby wrap for a while. Which she thought was pretty awesome because she was right in the middle of all the action. Addy is an excellent sitter and we are able to walk away from her now while she is sitting. She loves having this advantage over her brother and being able to access more toys!<br />
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Life with Addy: I sometimes refer to her as "Addy-tude" because holy moly, this girl has attitude! I have never seen anything like it! She can turn on the tears in a split second and turn them off just as quickly. When she is mad, she gives these short little hollers and stiffens up her arms- I guess its her version of stomping her feet! She definitely has become a "Mama's girl" and gives most everyone else trouble. To say that Addy loves attention is a vast understatement. She will go hungry and without sleep if it means that she can be where the action is. She's a funny little person that's for sure!<br />
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Some more pictures of the little people...<br />
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<tr><td class="tr-caption" style="text-align: center;">Happy 1st Turkey Day!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Meeting Santa</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">mmmmm Ice cubes</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Buggy sticking out her tongue</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Sitting up!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Babies in a basket!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Max wanted to hold her!! This is huge! He LOOOVES Addy! (Don't judge us on Max still having a nuk, it's a sensory thing- we don't like it either, but we are picking our battles)</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Holding Levi</td></tr>
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<br />Tiffanyhttp://www.blogger.com/profile/00136730311790093702noreply@blogger.com2tag:blogger.com,1999:blog-2444240168435786429.post-66252881167985578672012-12-19T15:24:00.002-06:002012-12-19T17:45:57.895-06:00Unwanted ReminderLast night I was sitting on the couch, watching the Voice with Dave, my mother in law, and Addy- who refused to go to sleep. I had grabbed the iPad to check my email- because I forget to do it all the time- and was shocked to find the following email...<br />
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This studio did Ellie's newborn pictures a couple weeks after she was born in Feb 2010. We received a call from them around Christmas in 2010 reminding us to schedule her one year pictures. I went into the studio and talked to a manager. I told her Ellie had died, that phone calls like this were very painful, and please remove us from their database. The lady who was working, said she too had lost a child several years ago and understood. We hadn't heard from them until this.<br />
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They obviously got the message. They even added the word "deceased" to her file. But they didn't delete our information like I had asked. I know that the sending of this was unintentional and that no one meant any harm by it. It's just an automated system that sends out reminder emails. I get it.<br />
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What I don't get it, is how someone thought it was a good idea to add the word DECEASED next to (actually in place of...) Ellie's name in the database and just hope that someone would catch before it went out. Obviously last year someone caught it- because we didn't get a reminder email to schedule a birthday picture session for our dead daughter's birthday. But this year, it got through.<br />
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My first reaction last night was to call the studio and talk to a manager. So I did. He felt horrible. His voice shook as he tried to clarify my information. I cried. I asked him to please, please make sure this doesn't happen again. He said that before he left for the night he would be contacting his bosses, the VP of marketing and anyone else he could think of. I hope he did.<br />
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A few kind and protective people have contacted the parent company on our behalf, and I am grateful for that because I'm not really sure how to react. I know how I would have reacted a year ago. With flames shooting from my ears, I would have called as high up as I could go and let them have it. I would have put it all over their Facebook page and demanded them to right their wrong. But now, I'm not so sure how to react.<br />
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The anger I felt a year as definitely eased. The anxiety over losing Ellie and the constant fear of a trigger has lessened. I'm not really sure how to describe it and I think you can only really understand if you've been through the loss of a child. But the desperation, the complete and total devastation that I used to live in has faded. I don't feel like my grief owns me anymore. I feel like I'm (mostly) in charge of it. Certain things still hurt- a lot, and I still avoid certain places, people and things that I know will bring up those emotions. It hurts to admit it, but its getting easier. I don't like admitting that we are surviving without Ellie. But we are. <br />
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As too many of us know, accepting our grief comes with a new set of emotions... Guilt, for example. I could write a book on guilt. For me, dealing with the fear of anxiety and those triggers moments has been difficult. Those moments of desperation and extreme sadness are so infrequent now, that when I feel like one is coming, I shut down. I completely over react and my fight or flight response totally kicks in. I will do anything to avoid feeling that way again.<br />
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So when this email arrived in all it's insensitive and horrendous glory, it took me by surprise. I didn't have time to freak out before hand and no time to flee. I called the manager. And I thought I would leave it at that. However, lots of other people think that we should make a bigger deal of it than that. And a year ago, I would have agreed. I was so accustomed to the stress, anxiety, sadness, anger and frustration, that it was no big deal to take on another moron(s). But I'm not used to it anymore.<br />
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Last night when I called the manager, I was calm at first. But as soon as the words starting coming out of my mouth, I lost it. I sobbed. I could hardly get the words out. And afterward, I was really shook up. I could feel that my anxiety was up for the rest of the night and I can even still feel it this morning. I hate feeling like this. I'm torn, on one hand I think they really need to know what happened and make sure that it never happens again. But on the other hand, I just don't want to deal with it. Its a weird place to be in.<br />
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In the end, I just don't want to ever receive another email like that. Ellie won't ever celebrate her birthday, and nothing can change that. I just don't need a reminder of that- especially a week before Christmas....<br />
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Update: The director of Flash called us both, separately, today, on his day away from the office, to apologize for what happened. He felt awful and said that he was told of this last night and has been sick about it since. He said he knows an apology won't make it better or take away what happened, but that they were truly sorry and that our name has definitely been removed from their database so that it won't happen again. This man was very nice and I could tell that he was really upset by what happened. I really, really appreciate him contacting us and taking care of the issue. He also said they would like to make a donation to Ellie's Light, which is very nice. Like I said, we know mistakes happen and no one did this on purpose. But it did hurt and having them acknowledge that was really appreciated. Hopefully we won't have to deal with this ever again, and neither will another family. Tiffanyhttp://www.blogger.com/profile/00136730311790093702noreply@blogger.com10tag:blogger.com,1999:blog-2444240168435786429.post-27619717497493646002012-12-19T00:51:00.000-06:002012-12-19T00:51:09.217-06:006 months x2Since the babies are actually 7 months today- I better write down all their six month stuff so I don't forget! So bad at this stuff lately!!<br />
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<span style="font-size: x-large;"><u>Levi</u></span><br />
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Weight: 15 lb 9 oz- 12th percentile for age<br />
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Diaper Size: Size 2<br />
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Clothing Size: 9 months<br />
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Nicknames: Little Fly Guy, Giant Baby<br />
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Eating: Gentlease Formula- failed a third attempt at breast milk so I give up! Taking 6 oz first thing in the morning and right before bed, otherwise 5 oz at a time. He eats about 2-3 hours. Levi is a very pokey eater and sometimes it seems to take him forever to eat!! A few days before they turned six months we started them on cereal! Levi took to it right away and gladly finishes whatever we make for him!<br />
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Sleep: Wakes up around 5am to eat, goes back to sleep until about 6:30 and then is up for a little bit. Takes two morning naps, a good afternoon nap, short evening nap before going to bed around 7:30pm. He usually sleeps through the night! He takes naps in his Podster in the crib, and still sleeps in his Rock n Play next to our bed.<br />
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Firsts: First solids- multigrain cereal mixed with formula! First time sending big sister Ellie balloons on her 2nd Angelversary. First Halloween- Levi was a little raccoon! He was so adorable! It was very chilly here, but we bundled everyone up and out we went! Levi seemed to like being out, which was surprising since he doesn't normally like it outside. He made it all the way around the block- just watching all the action! First time going to Grandma and Papa's house. Its only about an hour drive, but it was a big ride for them! He slept the whole way in the car and liked checking out the new place.<br />
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Life with Levi: Our little sweetie! He loves to cuddle and gives great kisses and wonderful hugs. He likes to chew on our faces, my hair, our hands, his hands, his feet, my cup or whatever else I'm trying to put into my mouth- ok, he tries to chew on everything! Even his sister! He is still very curious and tries to get his hands on anything. You can tell just by the look on his face that he wants to get a hold of whatever he is looking at. He is pretty laid back compared to his siblings, but he takes eating pretty seriously- so don't mess with him when it's bottle time. He has the most pathetic cry at night when he wants his nuk- but he usually settles back in as soon as he gets it. He is so smiley and I love his behind the nuk smile! Levi loves to hold hands when he is in his car seat, so cute!<br />
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<u><span style="font-size: x-large;">Addy</span></u><br />
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Weight: 14lb 4oz- 12th percentile for age<br />
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Diaper Size: 2<br />
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Clothing Size: 6 months<br />
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Nicknames: Bug, Buggers, Buggy Boo Boo<br />
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Eating: Pumped milk. Her bedtime bottle and first bottle of the day usually are 6oz. Otherwise she usually eats 5 oz every two- three hours. Addy also started multigrain cereal and we were not at all surprised when she was not interested in it after the first taste! We kind of had to trick her to get in!<br />
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Sleep: Addy usually wakes up around 5am for a bottle and then goes back to sleep until 6 or 6:30am (as long as someone holds her!). Addy takes pretty short naps throughout the day but occasionally we can get a decent nap in on the way home from therapy around lunch time. She falls asleep with her nighttime bottle, but almost every single night, she wakes up about ten min after we put her down to sleep. I hold her on the couch and she goes back to sleep. I don't know if she's worried she's missing something or just needs some extra cuddles. Like Levi, she naps in her crib in the Podster during the day, and sleeps in the Rock n Play next to the bed at night.<br />
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Firsts: First solids- multigrain cereal mixed with breast milk! First time
sending big sister Ellie balloons on her 2nd Angelversary. First
Halloween- Addy was a little owl! It was pretty cute! It was very
chilly here, but we bundled everyone up and out we went! Addy hated her costume and started protesting as soon as I had her dressed. Addy continued to be upset so after a half block, we brought her home to the grandparents. First time going to Grandma and Papa's house. Its only about an
hour drive, but it was a big ride for them! Addy fell asleep shortly after getting in the car then slept the rest of the way in
the car and liked checking out the new place and playing with her cousin Layton. So close to sitting up!<br />
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Life with Addy: Addy loves to be the center of attention, and if she isn't, she does her darnedest to make sure people know she isn't happy about it! She is so funny and has the cutest little giggle. Addy loves her toys, but would much rather be involved in whatever is going on around her. She sports quite the little attitude and is becoming a Mommy's girl. She is high maintenance but oh so cute. You can't not laugh at her antics and bids for attention. She even tries to get her brothers' attention- usually without success, which only adds fuel to her fire!<br />
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A few more pictures of the small people...<br />
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<tr><td class="tr-caption" style="text-align: center;">Sending our love to Ellie on her second Angelversary!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Playing while we carve pumpkins</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">The Determined Face</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Cousins</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Chewing on a red bell pepper! Not a fan!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">First bites of cereal!</td></tr>
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<br />Tiffanyhttp://www.blogger.com/profile/00136730311790093702noreply@blogger.com2tag:blogger.com,1999:blog-2444240168435786429.post-71818995984923264702012-12-02T23:51:00.001-06:002012-12-02T23:51:45.072-06:00New FirstsIts been two years since we last saw our little girl- tucked into a small white casket. Since then we've survived two rounds of every holiday- some three. We've weathered every season change and all the emotions that come with them. I've returned to Children's Hospital where Ellie died several times. Hell, we've even sat in the same ICU where Ellie died, just doors down, and listened to a doctor tell us we, once again, had a very ill child.<br />
After two years of surviving, it's pretty safe to say that we've survived all the "firsts." Not to say that holidays aren't still heartbreaking, and anniversaries aren't hard. But after two years, you start to get a little less fearful of those triggers and anxiety producing firsts. The heavy fog and crushing pain of the first year has eased, and the lows are further apart. I've gotten so used to being able to breathe again, that it surprises me when something makes me catch my breath.<br />
I knew that the babies would bring with them, a whole new set of firsts. Every once in a while something will make me sad, but so far none of the babies first have been that hard. After all, we had nine months with Ellie. So up until now, everything they've done- she did too. So far, its been just like any other siblings that come after another.<br />
But now the babies are six and a half months old. They are turning in to these amazing little people and each day grow closer to nine months and ten days old. Levi looks just like his big sister- so much so that when I look at Ellie's pictures, I have to look twice. And every day, Addy acts more and more like Ellie. She is a little stinker and just wants to be in the mix. Every day the babies get older and inch closer to the day when they will have out lived their sister...<br />
Levi- or "Giant Baby"- started wearing nine month clothing about a month ago. It crossed my mind that 9 months was the last size that Ellie wore. But the thought was fleeting. Levi wears blue and green clothes that have cars and baseballs on them. He wears the clothes his big brother wore- or something brought just for him. It was a first but a gentle first.<br />
Addy, our loud but tiny little lady, still easily fits into most 6 month clothing. But some things are starting to get a little tight. Its one of the moments I've been dreading... it's time to get Addy some 9 month clothing... So I knew I had two options...I could ignore the two tubs in the basement labeled 6-9 months girls and just start from scratch, or suck it up and go through the tubs. I knew it was ridiculous to let a box full of perfectly good clothes to just sit down there.. But I also knew the tub had some clothes that Ellie never had the chance to wear...<br />
When we moved, I put some important pieces of Ellie's clothing- the last dress she wore, the pajamas, her denim skirt, hair bows, in a separate tub. A tub that was just for Ellie. And no one else. The rest were taken straight out of the drawer and put into a tub- others off the closet rod, still on hangers. The last time that those clothes were folded or hung, were for a little girl that was still alive. A little girl that lived, that breathed, that laughed and smiled. For a little girl that isn't here anymore.<br />
Sifting through the tub of pink and purple was the hardest thing I've done in a long time. When most moms go through a box of old baby clothes they think things like, "Oh she wore this the first time we went to the zoo" or "Awww, she wore this for her nine month pictures..." Not things like, "she wore this the last time we were at the mall and for our last tea party two days before she got sick and died," which is exactly what I thought when I came across a long sleeved purple onesie with a cupcake on it...<br />
In the tub, there were a few things that Addy could fit into, but I just couldn't bring myself to wash for her. I guess those will just be Ellie's. And inside the tub were also the items I fear the most... Those that she never wore... But most of them are 12 months, so I wimped out put them back.<br />
I guess putting the babies in size three diapers- the last size Ellie wore, and facing the last round of clothes she wore, were enough firsts for this weekend...<br />
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<tr><td class="tr-caption" style="text-align: center;">I took this outfit out of the tub tonight... Man I miss her...</td></tr>
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<br />Tiffanyhttp://www.blogger.com/profile/00136730311790093702noreply@blogger.com3tag:blogger.com,1999:blog-2444240168435786429.post-39596369351866112612012-11-04T22:04:00.001-06:002012-11-04T22:04:42.540-06:005 months x2Levi and Addy are almost six months old now so I better get this done!<br />
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<u><span style="font-size: x-large;">Levi</span></u><br />
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Weight: Not completely sure... prob about 14.5lb<br />
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Clothing Size: 6 months, going on 9 months!<br />
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Diaper Size: 2<br />
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Nicknames: Giant Baby, Porkchop, Little Fly Guy<br />
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Food: Gentlease Formula. Right before bed and first thing in the morning he takes 6 oz, otherwise its 5oz- usually every 2-3 hours.<br />
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Sleep: Levi is such a good napper! He usually wakes up between 5-6am for his bottle and will occassionally go make to sleep, but is often up for a couple of hours before going down for his first nap. He usually takes 3 good naps, and a couple cat naps. Bedtime is about 7:30 or 8pm. He might stir a couple of times during the night, but rarely wakes up. Such a good sleeper!<br />
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Firsts: Rolling over! He is now rolling over as soon as we put him on the floor. Got another new cousin- baby Alex. Max's Birthday party. Picking out pumpkins. Going in the jumper.<br />
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Life with Levi: Levi is such a sweetheart! He loves to cuddle and "gives kisses." He will pretty much laugh at anything- even if something scares him (which most things do!) he still laughs at it! He loves toys and gets the best determined look on his face when he wants something. He is getting to be a good toy thief and tries to take whatever Addy has! He still has reflux issues and we are pretty vigilant about making sure he gets his Zantac. He hasn't really had a laryngospasm in a while so hopefully as long as we stay on top of the reflux, he has outgrown those horrible horrible things! He loves chewing on anything he can get his grubby paws on. He loves his nuks and really loves his blankie! He talks a lot and while social, he is a little reserved at first.<br />
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<u><span style="font-size: x-large;">Addy</span></u><br />
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Weight: Not really sure... prob about 13lbs<br />
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Clothing Size: 6 months<br />
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Diaper Size: 2<br />
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Nicknames: Bug, Buggy, Buggers, Buggy Buggy Boo Boo<br />
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Food: Expressed breastmilk. She usually takes 6oz at her morning feeding and right before bed. Otherwise she'll eat 4-5oz about every 3 hours.<br />
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Sleep: Great little sleeper at night! Usually goes to sleep around 7:30- 8pm. Addy will either wake up at about 1 am or when Levi wakes up 5 am for her bottle. She might take a decent morning or afternoon nap but otherwise she just takes little cat naps.<br />
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Firsts: Also rolling over! She rolled over one morning when I wasn't looking! Little stinker! Got another new cousin- baby Alex. Max's birthday party. Picking out pumpkins. Going in the jumper.<br />
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Life with Addy: Addy is so funny. Not only does she think every thing and everyone is amusing but she is pretty hilarious herself. She is so happy and just wants to be in the middle of all the action. She will fight sleep for as long as she can, just because she is worried she will miss something! When Dave tickles her she has this real low belly laugh, but otherwise she has the highest pitch shrieks. She loves to chew on her fingers and toys. She gets a little crabby when she can't get to her toes. She definitely has a bit of an attitude and wants to get her way! She is very social and loves watching her brothers.<br />
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Some more cute pictures of the small people:<br />
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<br />Tiffanyhttp://www.blogger.com/profile/00136730311790093702noreply@blogger.com5tag:blogger.com,1999:blog-2444240168435786429.post-88987752460584922302012-10-31T21:49:00.000-05:002012-10-31T21:49:51.208-05:00Halloween 2012<div class="separator" style="clear: both; text-align: center;">
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<br />Tiffanyhttp://www.blogger.com/profile/00136730311790093702noreply@blogger.com2tag:blogger.com,1999:blog-2444240168435786429.post-81670136577308789362012-10-22T22:09:00.003-05:002012-10-22T22:09:59.234-05:00Capture Your Grief- Day 19: Project<u>Day 19: Project</u>, something done in memory of your child<br />
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I'm not sure why I felt the need to start Ellie's Light. I guess I wanted a way to keep talking about Ellie, adding pictures to her photo album, adding to her story. I didn't want October 29th, 2010- the day of her burial to be the end of her story. I knew that Ellie's life was meant to be something special and I knew there had to be more than just those amazing nine months and ten days we had with her. I refused to let Ellie just fade into the background as the world moved on.<br />
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Ellie's Light has given me something positive to focus on, especially during hard times like birthdays, anniversaries and during holidays. It keeps my mind and hands busy. It allows me to speak freely of our beautiful girl and share her picture with anyone I can. Ellie's Light has played a huge part in my survival during the last two years. And I am so completely grateful for everyone that has in some way, big or little, helped us keep Ellie's memory alive. I know, without a doubt, that it makes Ellie very happy to see how her joy and love has continued on.<br />
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I've been meaning to do a little update on Ellie's Light and this has provided the perfect opportunity- so here we go...<br />
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<span style="color: magenta;"><b>"Yummy in the Tummy with Love, from Ellie" Cookbooks:</b></span> <br />
We collected favorite recipes from many people across the country and compiled a cookbook of over 200 recipes. I use the cookbook quite frequently and have found several new favorites! Our cookbook sales have reached over $6600 already! These funds helped us purchase all of the items for our memory pouches and other memory making items for the local bereavement program.<br />
If you would like to purchase a cookbook ($20 +$2 shipping) go to <a href="http://www.ellieslight.com/">www.ellieslight.com</a><br />
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<b><span style="color: magenta;">Belle's Buddies:</span></b><br />
Last year for Ellie's one year Angelversary, we did a stuffed animal drive. These animals are given to bereavement programs and are distributed to brothers and sisters after a child passes. We have been touched by the groups that collected stuffed animals for us and all of the buddies that were donated by so many different people. To date, we've collected 348 buddies. That's 348 children that will receive a stuffed animal to hug in their time of grief. So often siblings are overlooked during this time of great loss and I believe that more needs to be done to support them. In the next year, I plan on donated some buddies to local labor and delivery units to be given to siblings of stillborn babies.<br />
Ellie's second Angelversary is in three days, and we are once again looking for new stuffed animals. If you are interested in donated a Buddy- please visit <a href="http://www.ellieslight.com/">www.ellieslight.com</a><br />
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<span style="color: magenta;"><b>Toys for Tots:</b></span><br />
During the holidays for the past two years, we have used Ellie's memorial money and fundraising proceeds to purchase toys for Toys for Tots. Our goal has been to not only support families during ciritical care hospitalizations and loss, but to simply spread joy. So once a year, we want to do something that is just about making kids happy. Ellie would be have been almost three years old at Christmas this year. She would have been all about the toys and soooo excited to see presents under the Christmas tree. Not all families are in the position to buy their kids toys for Christmas, and we want to help as many kids as possible feel that joy that a simple present brings during the holidays. To date, Ellie has given about $6000 worth of toys!<br />
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<span style="color: magenta;"><b>Ellie's Birthday Blankets:</b></span><br />
The hospital is cold. Very cold. Parents are stressed. Kids are sick. Resting in a cold, loud and busy hospital is nearly impossible. We know this first hand. A warm blanket makes a world of difference. It brings comfort. It encourages rest, healing and decreases stress. A colorful blanket makes the sterile hospital room feel more comfortable and inviting. It distracts from all the equipment and tubes. So each year on Ellie's birthday, we make (and collect) big warm fuzzy fleece blankets. It gives us something positive to do on Ellie's birthday, and I know it makes it a difference for the people that receive them. So far, Ellie has given over 100 blankets to cold patients and families.<br />
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<span style="color: magenta;"><b>Memory Pouches:</b></span><br />
When Ellie died, we walked away from the hospital with very little to hold on to. Some crappy photo copies of her footprints, blurry pixalated pictures and some grief information, all stuffed into a PLASTIC bag. Looking back on it, it makes me irrate! It was so disrespectful of what we'd just been through and to the beautiful life that Ellie had lived. After the fog started to lift a little, I knew something had to be done. So last fall, we donated 100 memory bags/ pouches to the local bereavement program. These included a canvas personal belonging bag, cloth pouch to protect smaller keepsakes, a journal, photo album, a candle, a touchstone, matching bracelet set, and a small box to protect a lock of hair. Ellie's Light has also donated photo paper and ink, as well as hand print kits. <br />
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<span style="color: magenta;"><b>Light Up the Lanes:</b></span><br />
On August 21st, we had our second Light Up the Lanes bowling fundraiser for Ellie's Light. I am so happy to report that we raised approx $9500 this year!! We cannot say thank you enough to all of our donors- our generous sponsors AND silent auction donors. We had over 100 silent auction items alone! There was a great turn out and the fun, beat up feel of the night was a perfect way to celebrate our Elle Belle! Here are some pictures taken by Bri at <a href="http://www.briliciousphotography.com/" target="_blank">Brilicious Photography</a>- check out our Facebook page for more pictures!<br />
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<br />Tiffanyhttp://www.blogger.com/profile/00136730311790093702noreply@blogger.com2